My Sibling Experience as a Caregiver of Twin Sisters Living with a Neurodevelopmental Disease

My Sibling Experience as a Caregiver of Twin Sisters Living with a Neurodevelopmental Disease

By Paulina Polanco

My name is Paulina Polanco, l am a Syngap sibling to two 20-year-olds, they're twins and their names are Esperanza and Libertad, or Espy and Libby for short. They were diagnosed with Syngap1 in 2020, but we didn’t realize the importance of that diagnosis until Espy had a grand mal seizure for the first time ever in 2021, right before the new year. That night completely changed our lives. Before that, neither of them had had seizures, so we thought autism was the main reason for their condition, and that Syngap1 was just another name to add to the list of ailments. The night that Espy had the seizure, I was the one who found her.

That experience brought a lot of emotions to the surface that I had never paid any attention to. I wrote about how it went for me, so I'm going to read some excerpts of that to you all:

Coming home from experiencing new parts of life and making new memories usually would’ve felt comforting. Back in my home, my sanctuary, where I’m most comfortable. So why was I feeling anxious on the drive home? It's not that I don’t want to be there, it's not that I don't want to help. I want to help in any way that I can because my sisters need all the support they can get and I know how hard being a caretaker can be, both physically and mentally. And at the same time feeling guilty and ridiculous all at once because I just went out and had a great time. Am I ungrateful? Am I selfish for wishing I could do these things more often without having to worry?

In 2006 when the twins were diagnosed with autism, there wasn’t much known about it. It was all new to us, and seemingly new to the general public too. It was scary and daunting and extremely confusing for me being that I was just 9 years old. If the twins would’ve been born now, we would’ve been much better equipped for this life, with more knowledge or at least a vague understanding. Fourteen years later, with the Syngap1 diagnosis, it felt like deja vu.

My parents are extremely supportive, they encourage me to go out and live my life, but I can't help but feel the way that I do. The thoughts of what it'll be like when they're gone linger around in my head frequently to the point where I've lost sleep over it. But when I do go out and have fun, I forget for just a moment about my reality. In those moments, I'm just me, I'm not my sisters’ keeper, I'm not a caregiver. I'm just me. It's freeing, but when I come home it all hits me again.

The fear, the anxiety, the unknowing. I feel guilty because it's not anyone's fault. I would never want to make the twins feel unwanted, even if they don't know what that would mean or if they wouldn’t care. I know, and I care. They feel the love and care we have for them; it shows when Espy hugs me and presses her cheek against mine. It showed when Libby’s teacher said she was in a great mood the day after their birthday, when we bought them an ice cream cake and sang in unison several times just to make Libby laugh. In reality, I think I’m happiest when my sisters and my parents are happy. But there's a deep sadness when I think about how it would’ve been if they could've learned to talk and hold conversations. I wonder if l would’ve gotten into fights with them for stealing my clothes, if we would’ve helped each other do our hair, had movie nights together, or sister dates with our other sisters. Sometimes I hope to see them in my dreams. I feel like I’m mourning someone who never existed—never got the chance to exist. I know there's really no point in that, but I can’t help but wonder.

Despite all that, the twins deserve to be loved and cared for as they are, for what they are and what they are not. Their hearts are pure, they show us their raw emotions, their frustrations when they aren’t being understood, their joy at things we will never understand, their pain that they can’t express, their boredom that they don’t know how to cure. I feel calm knowing they have us to go through all of that with them.

Libby and Espy. Words can’t explain how much I love them. I love to hear them laugh, I love to see and hear about the cute and funny things they do and how they surprise us sometimes with the things they've learned. I'm proud when I hear them say things clearly, even if it's just to get what they want such as "I want cupcake" or to get us to leave with "I want bye". I admire the incredible resilience they have despite all the hardships they've gone through.

Similar to what Winnie the Pooh once said, if they live to be 100 years old, I hope to be 100 years and one day so that they never live a day without feeling genuinely cared for and loved. Sometimes I have to remind myself that I'm their sister and not their mom and I'm allowed to make my own life too. Thanks to the twins, I am who I am. I owe my heart to them. I am more understanding of humanity because I see it fully in them. I try to figure out what they’re feeling, why they do what they do. I examine how they react to things; I think about what may be causing a certain behavior so l can help reduce it or avoid it and make things easier for them. Helping them helps me be better.

I feel so blessed to be able to be a part of their lives, to know what pure, unconditional love is, to know how it feels to give it without expecting anything in return, and being okay with receiving it in different ways that we aren’t used to seeing. Growing up with Syngapian sisters was a lot of things, it was unusual, it had its struggles, but it isn’t something I would trade. I say that because as their sibling, I've surrendered to the situation. They are who they are and deserve to be accepted that way. Sometimes it feels like there's no light at the end of the tunnel. But maybe that's because there is none. There are windows. There are parts where it's dark, parts where it feels like it's not bright enough, and parts where the light engulfs us. There is light all along the way. It's all an ongoing process, there will be hard times, and there will be easy and amazing times.

I'm grateful for all of it. And I’m grateful that so far, my family and I have had the will to face these things and to grow through them, and I hope we continue to have the will and strength to keep going.